Chronically Ill Viral Preparedness

I’ve gathered together a few resources I’m seeing that may be helpful with thinking and planning. Obviously, I’m not a doctor, and I’m not giving medical advice.

Personally, I’m only doing a little that is different, and it’s generally in alignment with my intentions for better preparedness in general. It’s just a push I needed.

I’ve reminded folks who come to my home not to come if they’re sick.

I’ve reminded folks who come to my home to use hand sanitizer.

I’ve put up signs reminding others of the above. I got mine from Ricky Buchanan. You can check out her hand washing one, and check her comments for the hand sanitizer one.

I’ve stocked up on some more MCAS-safe shelf stable food that doesn’t require much preparation. I’m mostly concerned that I could have even more time than usual without care if aides or others get sick. Things like oatmeal packets and protein shakes.

I already have a Cambridge mask, which I would use if I needed to leave the house (which I would have done anyway during cold and flu season). If you’re planning on using a mask, used incorrectly they can actually increase your risk of infection. Here are some tips from the CDC on how to do this correctly.

I’m also stocking up on a new box of gloves in case I go out, or if my aides forget theirs.

We are humans relearning to wash our hands.
Washing our hands is an act of love
Washing our hands is an act of care
Washing our hands is an act that puts the hypervigilant body at ease
Washing our hands helps us return to ourselves by washing away what does not serve.

Wash your hands
like you are washing the only teacup left that your great grandmother carried across the ocean, like you are washing the hair of a beloved who is dying, like you are washing the feet of Grace Lee Boggs, Beyonce, Jesus, your auntie, Audre Lorde, Mary Oliver- you get the picture.
Like this water is poured from a jug your best friend just carried for three miles from the spring they had to climb a mountain to reach.
Like water is a precious resource
made from time and miracle… read more…

COVID-19 and POTS

While there is no data on how COVID-19 affects individuals with autoimmune and/or autonomic disorders, we can hypothesize how they would respond to COVID-19 based on their response to the flu. My personal opinion is that patients with these disorders should be viewed as high risk population even if the CDC and other organizations may not specifically identify them as such. To err on the safe side, I think it might be wise for patients with autoimmune and/or autonomic disorders to follow the CDC guidelines and infectious disease expert advice that’s applicable to people with underlying health problems or those over age 60. These recommendations are as following:

COVID-19 and MECFS

#7 Have some supplies on hand, but don’t go crazy. Some experts have recommended preparing the same way you would for a big storm: have nonperishable food and a two week supply of medications on hand. I wish one of them would tell my health insurance company that so I can actually get the two week supply ahead of schedule. Keeping easy to prepare food on hand is always a good idea for people with ME anyway, since we never know when a crash will make food shopping and prep impossible.

#8 Prepare for disruption of your routine. I have personally found the angsting over quarantine to be a bit ableist, since millions of people with serious health conditions (including ME) are already living partially or entirely as if we are quarantined. Being told to stay at home is redundant for those of us that rarely leave it. However, restrictions on who can come to us, especially those who live alone and depend on outside help, would have a significant impact. Thinking through your backup plans in advance is a good idea. Can you get groceries delivered? What are your options for getting medications or other essential items if you can’t go out for a week or more? If the person/people who help you were unavailable, do you have backup help?

#9 Make a healthcare plan. You may not be able to get to your doctor’s office easily even on a good day, if you have ME. If you are sick with an acute illness on top of ME, it will be even harder. Does your doctor offer any virtual services, such as video or phone consults? Make a plan with your primary care doctor or nearby urgent care so that you can get tested and treated if you have symptoms of any flu-like illness.

#10 Do not delay seeking healthcare. Flu-like symptoms that might be of less concern in a healthy person can be very serious for people with ME, so consulting a healthcare provider should not be delayed if fever, cough, or congestion develop. The risk of complications is too high. In the past, I haven’t always bothered to call my doctor when I spiked a fever or had bad congestion. This year, I called my doctor the moment my temperature went up, and I was able to get treatment for suspected influenza that helped my recovery. If you get flu-like symptoms, call your doctor right away. Don’t wait and risk developing more severe illness.

I would think that the most important aim is to avoid catching the virus in the first place, and to survive until the epidemic passes. Of course, 25% members are
actually at lower risk of catching the virus because they hardly go out at all! However. I would advise you all to be as fussy/paranoid as possible about not
coming into contact with visitors or health workers who might be infective. Don’t feel guilty about being labelled “over-anxious”, this is really important. Consider
discouraging as many visitors as possible for the time being if you can tolerate theisolation.

Anyone with cold/flu like symptoms should not visit anyone in the 25% group. This could be awkward if a carer is involved.

Vulnerable Populations

As a matter of political reality, we need to know how serious COVID-19 is in order to demand the legislative action that will allow us to survive in case the mortality rate is even 1% to 2% in a country of ~320 million.

What do I mean? If social distancing measures are implemented, and the healthcare system is overwhelmed with COVID-19 cases, chronically ill Americans should have an emergency stockpile of the medications they rely upon. It isn’t just me saying this, CDC’s guidance for normal preparedness says “Keep at least a 7 to 10-day supply of prescription medications. Keep your medications in labeled, childproof containers.”

Have you ever actually tried to get a payer to cover an extra supply of medication for an emergency? Payers will only do so if forced to by law. And if they are forced to do so by law, it will take time for the computer systems that pharmacies, insurers, Medicare, Medicaid, IHS, VA, PBMs, etc. etc. etc. rely on to be patched. That’s one reason we need legislative action very, very soon.

And what about restrictions on controlled substances? Imagine the situation in which COVID-19 has overwhelmed the US healthcare system, social distancing measures are being enforced by government through the use of emergency police powers (here, I mean “police power” as a legal term of art), and chronically ill patients run of out vital medications that also happen to be controlled substances. Unless action is taken very soon, those patients will have no options other than to suffer without their medications, harming their health – potentially causing death.

I think we need provisions in place now for everyone to have access to something like an additional 30 day emergency supply of their medications in case COVID-19 turns out to actually be the threat it now seems it may be.

Among the events disrupted by concerns about coronavirus was a planned stop in Little Rock this week by the Poor People’s Campaign’s National Call for Moral Revival.

Speakers were to include a Jonesboro man released from prison under the fair sentencing for minors act and a Little Rock man, a veteran, living on low income. The story is reflected in the video excerpt above.

With the event canceled, the campaign offered an op-ed from its leaders, Rev. William Barber and Rev. Liz Theoharis. It talks about how the coronavirus crisis particularly threatens the working poor and the related impact that holds for everyone else. Example: those without sick leave keep working, often in jobs caring for people most at risk.

While it’s incredible that we have immediate access to COVID-19 updates, there’s one big problem with the way the media has been covering the outbreak. We have reporters, social media influencers and other public figures trying to reassure us that we’re probably going to be fine — well, most of us anyway. All of us except the elderly and immunocompromised.

“Don’t worry,” they say. “Wash your hands and carry on,” they advise. “You’re young, it’s not like you’ll die or anything! It’s just the elderly and people with compromised immune systems that will be affected!”

We disabled activists take it on ourselves to find, create, and broadcast information to our own communities of medically high-risk folks. We don’t do it because we want to, or because we enjoy it, or because we’re getting paid for it. We do it because we don’t want to die.

Hardly ever are we paid for the emotional, traumatic labor of doing what public officials refuse to do: Acknowledge our humanity.

During the 2019 PG&E electricity cutoffs in the Bay Area, near where I live, a common theme arose from the disabled community by necessity. That theme was mutual aid, under the premise that no one else is going to watch out for us, so we have no choice but to fend for ourselves and each other. Barely funded non-profits rallied with small donations to get generators to people who rely on medical oxygen or electric beds to live. People living in poverty came up with plans to help each other survive without power.

This kind of cobbled-together care should NOT be the norm. I’m sharing it because it’s an example that points to the larger issue that disabled people (which includes people living with chronic illnesses and immune-related conditions) are simply left out of planning for disasters and significant health threats. Our lives are seen as expendable. Plans and public messaging are drafted with only healthy people in mind as the audience, as if no one listening will be “those in poor health — and if they are, well, someone else will handle that, and it’s OK if they die.”

Mutual Aid

I’ve had a lot of people ask me for advice about what is really needed for a two week prep, seen a lot of vague articles in mainstream papers, and I’ve seen a lot of people go out and do things like buying flats of small water bottles in plastic, jerky and power barst. It can be hard to sort through prepper info online, especially since a lot of it is coming from far right wing communities preparing for Armageddon with the two year buckets of freeze dried food.

So I’ve compiled some lists, thoughts and strategies on the disabled prepping I’ve been doing. Like everything, this is a work in progress and some things may or may not work for or apply for you- take what works and leave the rest. This is definitely a list coming out of my current life as someone who has housing and a little space- I am looking for and will post more resources when I find them aimed at folks in smaller spaces and/or living outside. (please message if you have favorites at the email address above.) This is also not an exhaustive list- there are a lot of other areas I could’ve gone into more detail on, but this thing is 13 17 pages already and I thought I would start here. For example: I have more financial resources currently (ie, savings) than I did for most of my life and was able to buy in bulk now more than I would’ve in the past. However, if I had less money now, I’d focus on rice and lentils and water and soap with some canned fish for wild times and keep it simple. This is not meant to be a “buy everything I did!” thing, but an example, or an overlapping series of examples, questions and thoughts.

To me, the five cornerstones of prepping are Water, Fuel (for heating and eating), Food, Health Supplies and Mutual Aid

Mutual aid can look many different ways. Those of us who are sick and disabled, black, indigenous, multiracial, and people of color, poor, working class, immigrants, queer, trans, two spirit, and more, probably already practice mutual aid and may not even know it. Mutual aid is that random person from the internet bringing a hot meal when you can’t get out of bed, it’s cleaning or spiritually cleansing the home of someone who’s too severely depressed to do it themselves, it’s staying up late talking to that suicidal friend, helping unpack an apartment after someone moves, giving rides to chemo, visiting or writing letters to folks in prison, walking someone’s dogs when they can’t walk them themself. It can also look like sharing coping skills, survival skills, job search skills. Mutual aid can be sharing medicine, making medicine, helping sift through allopathic doctors to find a good fit, or referring someone to that awesome working class naturopath you know. Mutual aid can also be fighting to change the structural causes of oppression so that everyone can be more free.

This is a living document, put together by folks from Fat Rose, Access-Centered Movement, and Disability Justice Culture Club in the SF EAST BAY during wildfire season 2019, updated as we get good information. Please help! If you have information that would be useful to others, please leave comments.